Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

  1. Irelandsmom, There is a pediatric rheumatologist at the University of Chicago who had dealt with PANDAS, Dr. Karen Onel. With the pains she has been having, a rheumatologist might be a good idea for a consult. Also, check the ASO titer and the antiDNASE AGAIN in about 3 weeks to see if it is rising. Some children's titers don't rise though, even with strep. Also, test for strep again, at least a few days after finishing the antibiotic, make sure they get a good sample, and have them send it to the lab for at least 48 hours. Ask them to run the full strep panel, both group A and
  2. http://www.generationrescue.org/pdf/yasko.pdf Found on www.generationrescue.org under treatment reading materials
  3. Thanks for your reply EAMom, We live in Illinois. I did start the Zithro and the blinking has stopped. I'm not sure any of our doctors would give us more, and honestly, I'm not sure she needs more. With no protocol and so many children needing such different doses and types of antibiotics, we may watch and see how she is after the 10 days. It all went away for her two years ago after 5 days of Zithro then (for a proven strep) Our ENT told us once that if we wanted to do a double dose of Zithro to make sure the strep was eradicated, that we should do 5 days on 5 days off and then 5 days
  4. Well hello everyone, I see now there is a dedicated PANDAS section here. And much more information being shared than ever before! I am returning to seek advice and opinions. My not so brief history is two years ago my dd at age 4 began eye blinking and shoulder shrugging during a time her brother had strep. We didn't have her tested at his onset of strep as she did not have classic symptoms. When her tics began we had her cultured and the ped ran an ASO and told us everything was negative and thought I was nuts when presenting PANDAS NIMH info. One month later she tested positive
  5. Kelly, I am so very happy to hear the good news about your son's reaction to the flu. I will pray for his continued good health. Hang in there. I do understand all you are going through as well. I believe we all find our own paths that are right for each of us - in time and with understanding and faith. Here's to a very healthy new year!
  6. Hi Kim and all who understand this, Kim, a while ago i read one of your posts talking about this stuff and found it very interesting especially since I believe you reported a cause to be the use of tylenol and motrin during strep?? Is that or something like that right? Your link above really helped me to understand what you are talking about but what are the signs to even suspect an issue? I just started my son on a multivitamin high in B's and I give him extra magnesium once in a while just to see if it helps him get to sleep better (no issues with tics etc. with him but do have with ol
  7. Hi Peggy and welcome to latitudes! My best advice is to just keep reading, reading, reading. There is so much information here and other places on the web that it can be overwhelming. You will find that when you read the same thing a month or two later you will connect with the information. We do the Bonnie's vits for my 5 year old and I think they are working well. My daughter's situation is almost definitely PANDAS (strep triggered) and there has been some debate about the grape seed extract in Bonnie's for people with autoimmune (PANDAS) issues so it is in the back of my mind to loo
  8. I've also heard from a D.O. about using Propolis as a natural antibiotic but don't know much about how to use it, doses, long term etc. Has anyone else heard of it? Rachel, let us know what the M.D./homeopath says. http://altmedicine.about.com/cs/herbsvitam...ee_propolis.htm
  9. Faith, I forgot to reply to you. The oppositional behavior for us was very obvious and strong. Like a very strong willed defiant child. The screaming was as Tracie described, unstopable and not able to be comforted or controlled. We thought it was night terrors or something. I believe now it was strep and I am so painfully sorry we didn't take her to the doc. Your son sounds like our daughter now which I would consider pretty normal for any kid, especially a smart 8 year old. Yours doesn't sound necessarily like ocd. We let our daughter sleep with us most of the time. It is just e
  10. Tracey, The tests will no longer tell you what was going on at the time of onset because it was so long ago but some kids' titers remain high for some reason and it could still be beneficial to see where your child is now. I believe the strep you have is strep B and many women (people) carry it and antibiotics during delivery help to not pass it on during labor (can turn into meningitis I believe). http://www.medicinenet.com/group_b_strep/article.htm From the link above it seems that if there weren't problems at birth you probably didn't pass it on. There are kids who h
  11. Tracey, Your story is so similar to ours! Our daughter had some screaming nights and day spells and some of what we now know are ocd tendencies similar to what you describe. For two years now we have been dealing with an on and off angry, oppositional child who we thought was just going through a very difficult phase. We have recently caught strep in her with virtually no symptoms (during one of which she was screaming in the night!) and feel positive now that the past screaming episodes she had strep with no classic symptoms so we missed it. Go to your doctors and get an ASO AND Anti-D
  12. Yes Michelle, thanks for that reminder. I did not know anything about anything when my daughter presented with tics when her brother had strep and the doc we went to did run an ASO titer at the time. It came back less than 200 and they dismissed strep as a possibility entirely. Interestingly, I just had both ASO and DNase run on both my kids and hers came back less than 100 this time. So why was it higher the first time? Perhaps it was just starting to rise??? Had I known then what I know now I would have had them run the ASO and DNAse again 2 or 3 weeks later. And I would have put her on
  13. Kelly, I agree that trying to figure the whole tic disorder spectrum can be very overwhelming at times because of the seemingly endless triggers and causes. Cheri, I was wondering if you happen to remember if your son had an illness at 10 around the time of the explosive increase in symptoms?
  14. I thought I was just missing the connection to your first link but yes it a good read as well. That is an interesting abstract and I would like to go get the whole journal article. I also want to know were the subjects all suspect PANDAS children or categorized as TS children? If all TS children, are they suspecting autoimmune for them as well? To further complicate our discussion, I found this article - http://ajp.psychiatryonline.org/cgi/content/full/159/4/657 Adding to the discussion of IVIG treatments for PANDAS ???? And this abstract http://www.spring
  15. Rachel, You may want to post again under the new topics stating you are new here, need advice etc. so that even more people can read your post and respond. Lisa
  • Create New...